by Barbara Ficarra | Long Read – Worth Reading
When Bassey Etim was diagnosed with COVID-19 or SARS-CoV-2 in the spring of 2020, he said he “felt really bad” for four straight weeks. A post-COVID syndrome long hauler, he initially experienced symptoms of vomiting, fatigue, shortness of breath and coughing. The vomiting lasted for one week. However, the fatigue, shortness of breath, and coughing continued to linger. Etim, Editorial Director for CNN Emerging Products and Platforms, said he initially experienced fatigue from emptying the dishwasher. “I’d have to stop and catch my breath. That was the level of fatigue I was dealing with,” he said. However, now Etim is at a point where his symptoms ebb and flow. This is one man’s story with post-COVID syndrome. Furthermore, you’ll find some helpful resources for post-COVID syndrome patients.
(Please note that Etim states he has a history of allergies and asthma which stem from childhood.)
Common Post-COVID Symptoms
While symptoms vary for post-COVID long haulers, the most commonly reported symptoms include––fatigue, shortness of breath, cough, joint pain and chest pain.
According to a new small study published in JAMA Network Open — research letter, it found that one-third of non-hospitalized patients continue to battle symptoms months after initial illness.
Etim is one of the non-hospitalized patients who continue to battle his symptoms. He explains that he feels “well for a week straight,” and then “for a day or two, he doesn’t feel well.” Before this point, he further explains that he felt “well for a half-day” and “not well for three days.” In other words, “I’m doing okay now. As time goes on, my relapses in post-COVID syndrome become more spread apart.” To clarify, Etim explains that when he feels well, he’s breathing without any major discomfort, he doesn’t have to think about how he’s breathing. When he doesn’t feel well or feels “bad,” he shares that the tightness in his chest makes him think often about his breaths.
Pulmonologist—Maria Padilla, MD
Maria Padilla, MD, is a Pulmonologist and Director of the Advanced Lung/Interstitial Lung Disease Program at Mount Sinai Medical Center, said that post-COVID symptoms are not unusual in the early period after the infection. “When we think of post-COVID syndrome, long COVID, the long haulers or the new acronym recently coined of PASC (Post-Acute Sequelae of SARS-CoV2 infection), we think of patients who continue to complain of symptoms beyond the early period—usually, beyond three months after their initial infection,” she said. However, symptoms can manifest rarely beyond six months and last for many more. “The most common symptoms are overwhelming fatigue and shortness of breath (SOB).”
[Please note: There is no doctor/patient relationship between Dr. Padilla and Bassey Etim.]
Other long hauler patients, she added may manifest primarily with instability of their autonomic nervous function such as changes in blood pressure, racing heart, palpitations or atypical chest pain.
Overwhelming Fatigue, Cough, Congestion in Post-COVID Syndrome
While Etim hasn’t experienced memory loss, or loss of smell or taste, he has experienced overwhelming fatigue, cough and congestion.
The chest tightness, the feeling of shortness of breath, must be alarming. Etim explains, for him the post-COVID syndrome shortness of breath is much different than shortness of breath from allergies/asthma. “I know my lungs and how they work. So, I know I don’t need to panic,” he said.
“Knowing my lungs so well, made it easier for me not to panic.”
While Etim might not have panicked, he said he was feeling frustrated and depressed. Trying to navigate through his symptoms, he said he couldn’t deal with it anymore. So, randomly he decided he was going to take matters into his own hands. He made a decision to try to do something to help him. Etim explains that for one entire weekend, where he felt the shortness of breath coming on—he’d stand up and do 50 jumping jacks. He said he significantly felt better—piggybacking off of that good feeling, he took a long walk. “It was really an invigorating experience, I hadn’t felt that good,” he said.
But, Not So Fast
Before you start doing jumping jacks—read on
However, before you start any jumping jacks of your own—talk with your health care professionals. Etim realized this wasn’t sustainable, it wasn’t working any longer. Jumping jacks for post-COVID syndrome wasn’t the answer. After speaking with his doctor, his doctor recommended Box Breathing instead– not the “crazy jumping jacks,” he said.
“Now I do box breathing almost every night,” he said. It’s really effective, he added. After I do the box breathing, I can still feel the tightness in my lungs, he said, but I can feel like it’s changing the pivot point of where I breathe.” So even though I’m experiencing tightness, it doesn’t feel like I’m out of breath. The box breathing makes your breathing start at a different point. “It’s like it resets your respiratory system.”
Breathe in for 4 seconds
Hold that breath for 4 seconds
Breathe out for 4 seconds
And hold for 4 seconds
“I keep doing this over and over,” he said.
Box breathing is a breathing practice that is also known as a deep breathing exercise of diaphragmatic breathing.
Etim explains that when he keeps doing this, he feels “a surge of endorphins.” He explained how he feels his lungs resetting in some way. “You might feel tight, but you don’t feel like you’re reaching the end of your breath so quickly.”
[Author’s note: there isn’t a plethora of information on Box Breathing. Before you begin anything new—talk with your doctor and other health care professionals.]
A slow recovery for post-COVID syndrome
There’s a shift in mindset—Etim explained that he adjusts to this reality—and by shifting his mindset, “it makes it comfortable.” “That’s been really big for me.”
Dr. Padilla said that post-COVID syndrome can manifest in patients with or without chronic conditions. If you have co-morbidities, perhaps, you may sustain more impairment.
While Dr. Padilla states that there is “no specific treatment modality for the constellation of post-COVID symptoms,” she said. “It’s important to know what the predominant manifestation or symptom is—and guide therapy to that.”
There are strategies to use to try to make long haulers feel better and help alleviate some of the symptoms. Perhaps, some strategies can help expedite their recovery, she said. For some patients it’ll be exercise therapy, medications and/or breathing exercises. “We look at the patient as a whole and then address the specific symptoms.”
For Etim, breathing exercises are helping him cope with his post-COVID syndrome symptoms of shortness of breath and congestion.
“I have reached a point in my recovery where I ‘m not physically limited in any way,” he said.
In addition, Etim recommends that people who are struggling with post-COVID symptoms to talk to their doctor.
It may feel hopeless, but don’t give up—stay positive…
Etim’s upbeat and positive attitude is refreshing. He says even though it can feel hopeless, don’t just live with it or give up—there are things you can do to strengthen your lungs. “Even if you can’t get rid of the symptoms, you can get to a place—and recognize—“I notice this, but it’s not affecting my life.”
It’s about being in control and staying positive amidst this new reality.
While Etim stated hasn’t visited a post-COVID treatment center, there are post-COVID treatment centers that may help.
“The post-COVID centers do a great job because they look at the patient comprehensively, and there are different experts in their various fields.”
Dr. Padilla explains that patients will be assessed and depending on their needs, and a plan of care will be developed. At the post-COVID center it is a multidisciplinary team. There’s a physical therapist, nutritionist, psychologist, social worker, pulmonologist, infectious disease specialist, cardiologist, etc. All of these disciplines are part of our post-COVID center.
For the Mount Sinai post-COVID center, you don’t need a referral she said. She suggests patients can go online to set-up an appointment. “Be patient,” she said because it may take some time due to the of the number of patients that need to be seen.
Helpful Resources: Online Support Groups for Post-COVID Syndrome Long Haulers
“Joining a support group is important, as is participating in Registries and Clinical Trials,” said Dr. Padilla. With online support groups, patients can attend with increased frequency. Patients learn from each other.
Mount Sinai Online Support Group
At Mount Sinai, their COVID recovery support group is open to anyone—not just patients from Mount Sinai. Rachel Potter, LCSW runs the COVID recovery support group.
If you’re interested in joining Mount Sinai’s COVID recovery support group—send an email to: firstname.lastname@example.org. Their next group is meeting on Tuesday, April 6th at 2 p.m. Dr. Padilla explains that part of the support includes mindfulness exercises and box breathing exercises. @MountSinaiNYC
Body Politic Online Support Group
Inspire Online Support Group
Another online support group is Inspire.
Inspire, a company with an online community of more than two million patients and caregivers, offers an online support group for people affected by COVID-19. Online community support help patients connect with others. Inspire’s online community can help reduce the feelings of isolation experienced by patients. By connecting with others, sharing their experiences with COVID-19 or any other condition, can be therapeutic. Social peer support can help improve the quality of life for patients. Patients can increase their knowledge of their health condition and learn self-care skills.
“We’re seeing new members joining Inspire to share and others on the topic of COVID-19, so we have created a specific online group focused on the coronavirus,” said John Novack, Inspire’s head of patient engagement, “and since we’re been around for 15 years and have more than two million-plus members in our community on Inspire.com, we see numerous discussions in existing groups, such as lung cancer, lupus, and sarcoidosis. A number of members want to exchange information not just about the coronavirus, and the vaccines, but information as it relates to their disease state. And for those who are identifying now as having Long COVID, they are often frantically seeking answers that, sad to say, may not exist yet anywhere.” @teaminspire
Helpful Resources: Post-COVID Centers for Post-COVID Syndrome Long Haulers
Some helpful resources in NYC include the following: (Outside of NYC, search for post-COVID centers in your areas.)
New York Presbyterian Health System: Weill Cornell and Columbia University Medical Center (CUMC) Locations
University Hospital of Brooklyn – SUNY Downstate
(Source: NYC Health -PDF)
There are ongoing clinical trials at Mount Sinai and other institutions. You may find information on study for Mount Sinai.
Bassey Etim’s long journey with COVID continues; however he’s at a point in his recovery where he’s not feeling physically limited. He’s come a long way. Shifting his mindset to adjust to the new reality has helped Etim in his treatment. With a positive mindset and determination, Etim is doing okay now with the help of breathing exercises. He no longer gets tired from simple chores like emptying the dishwasher. “Over time I can really detect—the slow, gradual improvement,” he said.
Talk to your doctor and health care professionals about the best treatment plan for you. Reach out to post-COVID treatment centers and participate in community online groups.
Summary in 30 Words
About post-COVID syndrome
If you have post-COVID syndrome, you’re not alone. Reach out for support. Bassey Etim’s experience offers hope and information that may help. Always talk to your health care professionals.If you have post-COVID syndrome, you’re not alone. Reach out for support. Bassey Etim’s @BasseyE story offers hope and information that may help. Always talk to your health care professionals. @healthin30 Click To Tweet
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